Best Practice Research Canada FASD Research Network. Linking research and practice: stronger together. Canada Northwest FASD Partnership

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1 Best Practice Research Canada FASD Research Network Dorothy Reid Co chair, Family Advisory Committee CanFASD Research Network Jacqueline Pei, Ph.D., R.Psych. Department of Educational Psychology University of Alberta Lead, Intervention Network Action Team, Canada FASD Research Network Linking research and practice: stronger together Canada FASD research network Family AdvisoryCommittee What have we learned about caregivers? What have we learned about intervention? Why do we need to work together? Canada Northwest FASD Partnership An alliance of four western provinces and three northern territories Focus on inter jurisdictional approaches to: diagnosis, prevention, intervention and care and support of individuals who are affected by FASD

2 CanFASD Research Network Canada s first comprehensive national FASD research network Network focuses on generating research evidence helpful in improving outcomes Recognized the need for including the voice of individuals with FASD and their caregivers CanFASD Family Advisory Committee The Mission of the Family Advisory Committee is to: Advise on research priorities for families impacted by FASD; and assist in translating results of research to ensure they are accessible to families. (2014) Why is Family Involvement in Research Important? To support the FASD community we need to close the gap between researchers, service providers, individuals and families living with FASD.

3 Finding FASD Research Reliable Sources of FASD research Information

4 CanFASD Issue Papers Breastfeeding and FASD Caregiver Needs and Stress in Caring for Individuals with Fetal Alcohol Spectrum Disorder: Lay Summary Computer Game Interventions for Individuals with FASD Dose response effect of alcohol consumption during pregnancy and prenatal alcohol exposure: A brief review Employment and FASD: Strategies for Success FASD & Employment Report, April 2016 FASD and the Criminal Justice System FASD, Stress and Mental Health Meconium Screening for FASD in Pregnancy Nutritional Supplementation and FASD Prevention of FASD: A multi level model Social and Economic Cost of FASD Stigma, Discrimination and FASD Warning Labels Why is FASD diagnosis important? CAREGIVERS NEEDS A lifespan approach: considering caregiver needs Bobbitt, S., Baugh, L., Andrew, G., Cook, J., Green, C., Pei, J., Rasmussen, C. (2016)

5 Considering Caregiver Needs Caregivers reported: many needs and concerns in caring for an individual with FASD Highest needs among caregivers with adolescents and adults more positive ratings on their experience of caregiving high levels of stress, which was highly correlated with many areas of need and concern These results have important policy implications for informing areas of need to be targeted with supports and services Efforts should be made to reduce caregiver stress and needs/concerns, which may improve well being FROM UNDERSTANDING TO INTERVENING. The value of caregivers (Zarnegar, Hambrick, Perry, Azen, Peterson, 2016) Intervention with children with prenatal alcohol exposure and maltreatment experiences Using: Child Parent Psychotherapy is relationship focused, reflective, and developmentally oriented Mindful Parenting Education aims to improve caregivers understanding of the regulatory challenges of their adopted children with FASD while reducing stress through promoting caregiver attainment of self regulation, parenting skills, and their sense of parental self efficacy.

6 The value of caregivers (Zarnegar, Hambrick, Perry, Azen, Peterson, 2016) Children s functioning significantly improved in several developmental domains. Parents general distress and their distress regarding the parent child interaction decreased. Core intervention research themes: Change can occur: evidence for both individualized approaches and support systems Individualized approaches Support Systems the power of relationship Adopting a growth mindset Practice plus strategies

7 The MILE Program: Strategy evolution Remediate underlying cognitive factors General learning ability Slower pace of instruction Active learning Touch, talk, experiment Working memory Small pieces of info Rhymes/songs Cues Repetition/practice Time for recall Visual spatial skills Tactile objects/manipulatives Guide visual attention Add structure to paper Vertical number line The value of relationship Nesting direct interventions with system level supports can both equip and support individuals with FASD Mentoring approaches have impact! Entry 18 months Scaled Scores Social Stress Depression Sense of p=.039 Inadequacy Internalizing Problems

The importance of Mindsets Mindsets: people s

Obstacles Increased Effort Higher Expectations (of

Motivation Imagine the benefits of growth mindsets

matters (Petrenko, Pandolfino, Roddenbery, 2016)

as relating to their disabilities used strategies

punishments tended to be less successful in

8 The importance of Mindsets Mindsets: people s beliefs about human abilities and characteristics. Just change the way you think! The Benefits of Growth Mindsets Overcoming Obstacles Increased Effort Higher Expectations (of others) Confronting Challenges Persistence Motivation Imagine the benefits of growth mindsets for AND towards individuals with FASD Perspective matters (Petrenko, Pandolfino, Roddenbery, 2016) Caregivers who viewed their children s misbehavior as relating to their disabilities used strategies to prevent misbehavior and were generally more successful in managing behavior. Caregivers that reported a primary reliance on punishments tended to be less successful in managing behavior, and described feeling more frustrated. Targeting caregiver attributions of behavior and related parenting practices may: reduce child behavior problems, increase parenting sense of competence, and improve family functioning

9 WORKING TOGETHER we need to work together Caregivers, researchers, individuals with FASD, service providers and policy makers need to work together to improve outcomes for individuals with FASD. FASD Research: Learning Together is an example of such collaborative model. FASD Research: Learning Together Workshop Regina, August participants 60 participants attended two day workshop

10 FASD Research: Learning Together Workshop Regina, August 2016 FASD as a Whole Body Disorder Aging and Transitions Advocating for Supports Strategies and Supports Working together The reciprocity between researchers and families: we need to work together! Why? Making meaning Optimizing approaches Avoiding harm Getting information to the people who need it Enhancing social policy The whole is greater than the sum of the parts When we work together we are strongest Ideal when we share: Understandings Mindsets Goals Priorities Knowledge both empirical and experiential Respect

11 So what can you do? Become aware of sources of empirically based FASD Research like Provide resource material to those you support Encourage individuals with FASD and their caregivers to participate in FASD research Be curious and share your curiosity Don t hesitate to share your questions Contact Information Jacqueline Pei, Ph.D., R.Psych. Department of Educational Psychology University of Alberta jacqueline.pei@ualberta.ca Dorothy Reid, M.A. Co chair Family Advisory Committee CanFASD Research Network reidwellness@gmail.com

ANNUAL REPORT

2016-2017 ANNUAL REPORT CanFASD WHO WE ARE The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) is a national, charitable organization whose focus is on supporting research and knowledge